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Mobilizing For The Caregiver

        In my years of writing The Person Behind The Chair my articles focused mainly on the emotional toll of caregiving for the spouse and family of the chronically ill. I have only touched upon the actual financial cost, which is staggering. If a spouse needs to be placed in care, the cost of that care can bankrupt a family. Most health insurance policies do not include care facility costs as part of what they cover. Even Long Term Care Insurance may not cover a facility placement, and if it does, the cost may only be supplemented.

 

         In Canada, where there is socialized medicine, nursing home placement costs are income based. And so, for most people in the middle class, the cost after the government supplement can be as high as $2000 a month for a private room. For most of us, that is more than half of our monthly income. So even if a spouse works, and more than half goes to the partner’s care, what is left for the healthy spouse and his family to live on after that?

 

         There could be house payments, tuition and clothing, without even mentioning how you put food on the table. And that is with the help of socialized medicine, which doesn’t exist in the U.S. This is one reason (among many) that spouses opt to keep their chronically ill mates at home. But the expense of chronic illness, without nursing home placement, is also overwhelming.

 

         Most medication required by chronic illness is very expensive. It is also a progressive problem. As the disease worsens the amount of medication a person needs increases. More meds means more cost. Also, chronic illness can quickly affect other parts of the body. Anti-depressants, anti-spasmodic, painkillers, muscle-relaxants, along with new medications as the disease progresses, may cause the breakdown of other organs. Then there is the inevitable cost of medication, for the spouse, whose stress over time might require medication for his/her own health.

 

         On top of all of this is the cost of accommodating the home to the progressive inability that comes along with long-term illness. Everything from special beds to oxygen tents, canes to walkers, wheelchairs to Hoyer Lifts are, just to mention a few, pieces of equipment that might be needed. Widening doorways and building ramps to accommodate the equipment is also very expensive, as are the assistants needed to help move, bathe and sometimes feed the person with chronic illness.

 

         To date little has been done to ease the financial burden of chronic illness on the individual families it attacks.

 

         One of my readers recently sent me an idea. She too is financially overburdened from the cost of caring for her husband. She suggested that the readers of my column along with every friend and relative they could muster, join politically active organizations like AARP (American Association of Retired Persons) and CARP, its Canadian equivalent.

 

         The cost of membership is small. Then, as a group, we can ask these organizations to make the financial burdens of chronic illness one of their priorities when dealing with the government. If it is a request from a large number of the membership, and a priority to the organization, hopefully, it will be something they will take on when lobbying the respective governments. Certainly it is worth a try.

 

         Another reader complained that as a middle-class Canadian, she was paying the same amount for nursing home care, as was a millionaire whose wife was in the same facility. He felt that the income brackets for the amount paid had to be more fine-tuned and those in the highest income bracket should get the smallest subsidy, if any.

 

         Lastly, one reader suggested that there be a cash benefit paid out to caregivers who nurse their spouses at home. She equated it to Canada’s Child Benefit, which is an income-based cash allowance for preschoolers that can often mean the difference between a mother staying at home to raise her children or working outside the home. She felt it would help spouses keep their chronically ill partners at home while easing the burden that comes from doing this.

 

         Whatever the suggestion, it all involves getting our respective governments to see the tremendous financial burden caregiving imposes on a family. If anyone has other suggestions on how to make care- giving a government priority, please feel free to send me your suggestions for sharing with other caregivers. Meanwhile, increased membership in AARP/CARP may be a good start.

 

         For further information or membership, AARP can be reached online or at 1 888 687 2277. CARP can be reached online at Carp@50plus.com or at 1 416 363 8748.


         You can reach me at annnovick@hotmail.com

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More Articles from Ann Novick

When one is blind one learns to use Braille to read. When one cannot walk, a wheelchair gives mobility. Sign language allows a mute person to speak and ocular implants assist in hearing when one is deaf. These are all compensatory strategies that help a person function despite his disability. But compensatory strategies are not just for physical problems. Understanding our psychological weaknesses and setting up our lives to ensure that we are not tempted to repeat our past mistakes, is as necessary as any aid to the disabled.

Well spouses have often discovered that their friends and relatives, despite their closeness to the situation, often don’t realize the tremendous emotional impact living with chronic illness has on the family. With the best intentions, suggestions, ideas and criticism are offered, based on the non-experience of those with healthy families. Even when the good intentioned get a taste of the difficulties, it is sometimes not enough for them to then identify and understand what the family of the chronically ill must face on a constant basis.

Over the past two weeks I have shared letters from a therapist and a well spouse. Both of the letters gave personal insights into the process of losing hope, how we react when that happens and some ways of coping when test scores, diagnosis and just simple repetitive behavior indicate that change for the better is impossible.

Dear Ann,

I’ve read your last few articles on psycho-neurological testing (Oct.8-22) with interest. As a therapist who has counseled couples dealing with chronic illness, I’d like to give you another perspective.

Dear Ann,

Your articles on the Neuro-Psychological Testing were right on (October 8-22). My husband underwent testing twice and your articles explained it things exactly the way they were. Besides the test, we also tried therapy.

Very often when we can’t face our big hurts or big loses we focus on the little ones. We can discuss those. We can cry over the small loses, be angry at the smaller hurts even though it may look trite and sound ridiculous to others.

Over the last two weeks we have been discussing one way in which well spouses can determine whether behavior displayed by their ill partners is caused by their illness or is a way they have chosen to act. We have focused on Psycho-Neurological testing, what it can tell us, as well as its pros and cons.

Last week I discussed a question that haunts many well spouses: not knowing if the difficult and often inappropriate behavior frequently displayed by their partners are caused by the disease and therefore not-controllable, or if the behavior is a choice the spouse makes and can therefore be changed. This doubt can be the source of much frustration and many marital disagreements. One way of alleviating this doubt is by having a psycho- neurological work up done. But that path is not so simple.

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